In Pawtucket, Rhode Island, near a storefront advertising “free” cellphones, J.R. sat in an empty back stairwell and showed a reporter how he tries to avoid overdosing when he smokes crack cocaine. KFF Health News is identifying him by his initials because he fears being arrested for using illegal drugs.

It had been several hours since his last hit, and the chatty, middle-aged man’s hands moved quickly. In one hand, he held a glass pipe. In the other, a lentil-size crumb of cocaine.

Or at least J.R. hoped it was cocaine, pure cocaine — uncontaminated by fentanyl, a potent opioid that was linked to about 75% of all overdose deaths in Rhode Island in 2022. He flicked his lighter to “test” his supply. He believed that if it had a “cigar-like sweet smell,” he said, it would mean that the cocaine was laced with fentanyl. He put the pipe to his lips and took a tentative puff. “No sweet,” he said, reassured.

But this method offers only false and dangerous reassurance. A mistake can be fatal.

It is impossible to tell whether a drug contains fentanyl by the taste or smell. “Somebody can believe that they can smell it or taste it, or see it … but that’s not a scientific test,” said Josiah “Jody” Rich, an addiction specialist and researcher who teaches at Brown University. “People are going to die today because they buy some cocaine that they don’t know has fentanyl in it.”

The first wave of the long-running and devastating opioid epidemic began in the United States with the abuse of prescription painkillers in the early 2000s. The second wave involved an increase in heroin use, starting around 2010. The third wave began when powerful synthetic opioids such as fentanyl started appearing in the supply around 2015. Now experts are observing a fourth phase of the deadly epidemic.

The mix of stimulants such as cocaine and methamphetamines with fentanyl — a synthetic opioid 50 times as powerful as heroin — is driving what experts call the opioid epidemic’s “fourth wave.” The mixture of stimulants and fentanyl presents powerful challenges to efforts to reduce overdoses because many users of stimulants don’t know they are at risk of ingesting opioids, so they don’t take overdose precautions.

The only way to know whether cocaine or other stimulants contain fentanyl is to use drug-checking tools such as fentanyl test strips — a best practice for what’s known as “harm reduction,” now embraced by federal health officials in combating drug overdose deaths. Fentanyl test strips cost as little as $2 for a two-pack online, but many front-line organizations also give them out free.

Nationwide, illicit stimulants mixed with fentanyl were the most common drugs found in fentanyl-related overdoses, according to a study published in 2023 in the scientific journal Addiction. The stimulant in the fatal mixture tends to be cocaine in the Northeast, and methamphetamine in the West and much of the Midwest and South.

“The No. 1 thing that people in the U.S. are dying from in terms of drug overdoses is the combination of fentanyl and a stimulant,’’ said Joseph Friedman, a researcher at UCLA and the study’s lead author. “Black and African Americans are disproportionately affected by this crisis to a large magnitude, especially in the Northeast.”

Friedman was also the lead author of another new study, published in the American Journal of Psychiatry, that shows the fourth wave of the opioid epidemic is driving up the mortality rate among older Black Americans (ages 55-64) and, more recently, Hispanic people. Friedman said part of the reason street fentanyl is so deadly is that there’s no way to tell how potent it is. Hospitals have safely used medical-grade fentanyl for surgical pain because the potency is strictly regulated, but “the potency fluctuates wildly in the illicit market” Friedman said.

Studies of street drugs, he said, show that in illicit drugs the potency can vary from 1% to 70% fentanyl.

“Imagine ordering a mixed drink in a bar and it contains one to 70 shots,” Friedman said, “and the only way you know is to start drinking it. … There would be a huge number of alcohol overdose deaths.”

Drug-checking technology can provide a rough estimate of fentanyl concentration, he said, but to get a precise measure requires sending drugs to a laboratory.

It’s not clear how much of the latest trend in polydrug use — in which users mix substances, such as cocaine and fentanyl, for example — is accidental versus intentional. It can vary for individual users: a recent study from Millennium Health found that most people who use fentanyl do so at times intentionally and other times unintentionally.

People often use stimulants to power through the rapid withdrawal from fentanyl, Friedman said. And the high-risk practice of using cocaine or meth with heroin, known as “speedballing,” has been around for decades. Other factors include manufacturers’ adding the cheap synthetic opioid to a stimulant to stretch their supply, or dealers mixing up bags.

Researchers say many people still think they are using unadulterated cocaine or crack — a misconception that can be deadly. “Folks who are using stimulants, and not intentionally using opioids, are unprepared to respond to an opioid overdose,” said Brown University epidemiologist Jaclyn White Hughto, “because they don’t perceive themselves to be at risk.” Hughto is a principal investigator in a new, unpublished study called “Preventing Overdoses Involving Stimulants.”

In 2022, Rhode Island had the fourth-highest rate of overdose deaths involving cocaine in 2022, after Washington, D.C., Delaware, and Vermont, according to the Centers for Disease Control and Prevention.

The fourth wave is also hitting stimulant users who choose pills over what they perceive as more dangerous drugs such as cocaine in an effort to avoid fentanyl. That’s what happened to Jennifer Dubois’ son Cliffton.

Dubois was a single mother raising two Black sons. The older son, Cliffton, had been struggling with addiction since he was 14, she said. Cliffton also had been diagnosed with attention-deficit/hyperactivity disorder and a mood disorder.

In March 2020, Cliffton had checked into a rehab program as the pandemic ramped up, Dubois said. Because of the lockdown at rehab, Cliffton was upset about not being able to visit with his mother. “He said, ‘If I can’t see my mom, I can’t do treatment,’” Dubois recalled. “And I begged him” to stay in treatment.

But soon after, Cliffton left the rehab program. He showed up at her door. “And I just cried,” she said.

Dubois’ younger son was living at home. She didn’t want Cliffton doing drugs around his younger brother. So she gave Cliffton an ultimatum: “If you want to stay home, you have to stay drug-free.”

Cliffton went to stay with family friends, first in Atlanta and later in Woonsocket, an old mill city that has Rhode Island’s highest rate of drug overdose deaths.

In August 2020, Cliffton overdosed but was revived. Cliffton later confided that he’d been snorting cocaine in a car with a friend, Dubois said. Hospital records show he tested positive for fentanyl.

“He was really scared,” Dubois said. After the overdose, he tried to “leave the cocaine and the hard drugs alone,” she said. “But he was taking pills.” Eight months later, on April 17, 2021, Cliffton was found unresponsive in the bedroom of a family member’s home.

The night before, Cliffton had bought counterfeit Adderall, according to the police report. What he didn’t know was that the Adderall pill was laced with fentanyl. “He thought by staying away from the street drugs and just taking pills, he was doing better,” Dubois said.

A fentanyl test strip could have saved his life.

This article is from a partnership that includes The Public’s Radio , NPR , and KFF Health News.

©2025 KFF Health News. Distributed by Tribune Content Agency, LLC.

The availability of safe, effective COVID vaccines less than a year into the pandemic marked a high point in the 300-year history of vaccination, seemingly heralding an age of protection against infectious diseases.

Now, after backlash against public health interventions culminated in President-elect Donald Trump’s nominating Robert F. Kennedy Jr., the country’s best-known anti-vaccine activist, as its top health official, infectious disease and public health experts and vaccine advocates say a confluence of factors could cause renewed, deadly epidemics of measles, whooping cough, and meningitis, or even polio.

“The litany of things that will start to topple is profound,” said James Hodge, a public health law expert at Arizona State University’s Sandra Day O’Connor College of Law. “We’re going to experience a seminal change in vaccine law and policy.”

“He’ll make America sick again,” said Lawrence Gostin, a professor of public health law at Georgetown University.

State legislators who question vaccine safety are poised to introduce bills to weaken school-entry vaccine requirements or do away with them altogether, said Northe Saunders, who tracks vaccine-related legislation for the SAFE Communities Coalition, a group supporting pro-vaccine legislation and lawmakers.

Even states that keep existing requirements will be vulnerable to decisions made by a Republican-controlled Congress as well as by Kennedy and former House member Dave Weldon, should they be confirmed to lead the Department of Health and Human Services and the Centers for Disease Control and Prevention, respectively.

Both men — Kennedy as an activist, Weldon as a medical doctor and congressman from 1995 to 2009— have endorsed debunked theories blaming vaccines for autism and other chronic diseases. (Weldon has been featured in anti-vaccine films in the years since he left Congress.) Both have accused the CDC of covering up evidence this was so, despite dozens of reputable scientific studies to the contrary.

Kennedy’s staff did not respond to requests for comment. Karoline Leavitt, the Trump campaign’s national press secretary, did not respond to requests for comment or interviews with Kennedy or Weldon.

Kennedy recently told NPR that “we’re not going to take vaccines away from anybody.”

It’s unclear how far the administration would go to discourage vaccination, but if levels drop enough, vaccine-preventable illnesses and deaths might soar.

“It is a fantasy to think we can lower vaccination rates and herd immunity in the U.S. and not suffer recurrence of these diseases,” said Gregory Poland, co-director of the Atria Academy of Science & Medicine. “One in 3,000 kids who gets measles is going to die. There’s no treatment for it. They are going to die.”

During a November 2019 measles epidemic that killed 80 children in Samoa, Kennedy wrote to the country’s prime minister falsely claiming that the measles vaccine was probably causing the deaths. Scott Gottlieb, who was Trump’s first FDA commissioner, said on CNBC on Nov. 29 that Kennedy “will cost lives in this country” if he undercuts vaccination.

Kennedy’s nomination validates and enshrines public mistrust of government health programs, said Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia.

“The notion that he’d even be considered for that position makes people think he knows what he’s talking about,” Offit said. “He appeals to lessened trust, the idea that ‘There are things you don’t see, data they don’t present, that I’m going to find out so you can really make an informed decision.’”

Targets of Anti-Vaccine Groups

Hodge has compiled a list of 20 actions the administration could take to weaken national vaccination programs, from spreading misinformation to delaying FDA vaccine approvals to dropping Department of Justice support for vaccine laws challenged by groups like Children’s Health Defense, which Kennedy founded and led before campaigning for president.

Kennedy could also cripple the National Vaccine Injury Compensation Program, which Congress created in 1986 to take care of children believed harmed by vaccines — while partially protecting vaccine makers from lawsuits.

Before the law passed, the threat of lawsuits had shrunk the number of companies making vaccines in the United States — from 26 in 1967 to 17 in 1980 — and the remaining pertussis vaccine producers were threatening to stop making it. The vaccine injury program “played an integral role in keeping manufacturers in the business,” Poland said.

Kennedy could abolish the CDC’s Advisory Committee on Immunization Practices, whose recommendation for using a vaccine determines whether the government pays for it through the 30-year-old Vaccines for Children program, which makes free immunizations available to more than half the children in the United States. Alternatively, Kennedy could stack the committee with allies who oppose new vaccines, and could, in theory at least, withdraw recommendations for vaccines like the 53-year-old measles-mumps-rubella shot, a favorite target of the anti-vaccine movement.

Meanwhile, infectious disease threats are on the rise or on the horizon. Instead of preparing, as a typical incoming administration might, Kennedy has threatened to shake up the federal health agencies. Once in office, he’ll “give infectious disease a break” to focus on chronic ailments, he said at a Children’s Health Defense conference last month in Georgia.

The H5N1 virus, or bird flu, that has spread through cattle herds and infected at least 55 people could erupt in a new pandemic, and other threats like mosquito-borne dengue fever are rising in the U.S.

Traditional childhood diseases are also making their presence felt, in part because of neglected vaccination. The U.S. has seen 16 measles outbreaks this year — 89% of cases are in unvaccinated people — and a whooping cough epidemic is the worst since 2012.

“So that’s how we’re starting out,” said Peter Hotez, a pediatrician and virologist at the Baylor College of Medicine. “Then you throw into the mix one of the most outspoken and visible anti-vaccine activists at the head of HHS, and that gives me a lot of concern.”

The share prices of drug companies with big vaccine portfolios have plunged since Kennedy’s nomination. Even before Trump’s victory, vaccine exhaustion and skepticism had driven down demand for newer vaccines like GSK’s RSV and shingles shots.

Kennedy has ample options to slow or stop new vaccine releases or to slow sales of existing vaccines — for example, by requiring additional post-market studies or by highlighting questionable studies that suggest safety risks.

Kennedy, who has embraced conspiracy theories such as that HIV does not cause AIDS and that pesticides cause gender dysphoria, told NPR there are “huge deficits” in vaccine safety research. “We’re going to make sure those scientific studies are done and that people can make informed choices,” he said.

Kennedy’s nomination “bodes ill for the development of new vaccines and the use of currently available vaccines,” said Stanley Plotkin, a vaccine industry consultant and inventor of the rubella vaccine in the 1960s. “Vaccine development requires millions of dollars. Unless there is prospect of profit, commercial companies are not going to do it.”

Vaccine advocates, with less money on hand than the better-funded anti-vaccine advocates, see an uphill battle to defend vaccination in courts, legislatures, and the public square. People are rarely inclined to celebrate the absence of a conquered illness, making vaccines a hard sell even when they are working well.

While many wealthy people, including potion and supplement peddlers, have funded the anti-vaccine movement, “there hasn’t been an appetite from science-friendly people to give that kind of money to our side,” said Karen Ernst, director of Voices for Vaccines.

‘He’s Serious as Hell’

“RFK Jr. was a punch line for a lot of people, but he’s serious as hell,” Ernst said. “He has a lot of power, money, and a vast network of anti-vaccine parents who’ll show up at a moment’s notice.” That’s not been the case with groups like hers, Ernst said.

On Oct. 22, when an Idaho health board voted to stop providing COVID vaccines in six counties, there were no vaccine advocates at the meeting. “We didn’t even know it was on the agenda,” Ernst said. “Mobilization on our side is always lagging. But I’m not giving up.”

The kaleidoscopic change has been jarring for Walter Orenstein, who persuaded states to tighten school mandates to fight measles outbreaks as head of the CDC’s immunization division from 1988 to 2004.

“People don’t understand the concept of community protection, and if they do they don’t seem to care,” said Orenstein, who saw some of the last cases of smallpox as a CDC epidemiologist in India in the 1970s, and frequently cared for children with meningitis caused by H. influenzae type B bacteria, a disease that has mostly disappeared because of a vaccine introduced in 1987.

“I was so naïve,” he said. “I thought that COVID would solidify acceptance of vaccines, but it was the opposite.”

Lawmakers opposed to vaccines could introduce legislation to remove school-entry requirements in nearly every state, Saunders said. One bill to do this has been introduced in Texas, where what’s known as the vaccine choice movement has been growing since 2015 and took off during the pandemic, fusing with parents’ rights and anti-government groups opposed to measures like mandatory shots and masking.

“The genie is out of the bottle, and you can’t put it back in,” said Rekha Lakshmanan, chief strategy officer at the Immunization Partnership in Texas. “It’s become this multiheaded thing that we’re having to reckon with.”

In the last full school year, more than 100,000 Texas public school students were exempted from one or more vaccinations, she said, and many of the 600,000 homeschooled Texas kids are also thought to be unvaccinated.

In Louisiana, the state surgeon general distributed a form letter to hospitals exempting medical professionals from flu vaccination, claiming the vaccine is unlikely to work and has “real and well established” risks. Research on flu vaccination refutes both claims.

The biggest threat to existing vaccination policies could be plans by the Trump administration to remove civil service protections for federal workers. That jeopardizes workers at federal health agencies whose day-to-day jobs are to prepare for and fight diseases and epidemics. “If you overturn the administrative state, the impact on public health will be long-term and serious,” said Dorit Reiss, a professor at the University of California’s Hastings College of Law.

“If you damage the core functions of the FDA, it’s like killing the goose that laid the golden egg, both for our health and for the economy,” said Jesse Goodman, the director of the Center on Medical Product Access, Safety and Stewardship at Georgetown University and a former chief science officer at the FDA. “It would be the exact opposite of what Kennedy is saying he wants, which is safe medical products. If we don’t have independent skilled scientists and clinicians at the agency, there’s an increased risk Americans will have unsafe foods and medicine.”

Outbreaks of vaccine-preventable illness could be alarming, but would they be enough to boost vaccination again? Ernst of Voices for Vaccines isn’t sure.

“We’re already having outbreaks. It would take years before enough children died before people said, ‘I guess measles is a bad thing,’” she said. “One kid won’t be enough. The story they’ll tell is, ‘There was something wrong with that kid. It can’t happen to my kid.’”

Arthur Allen: aallen@kff.org, @ArthurAllen202

Within days of Donald Trump’s election victory, health care entrepreneur Calley Means turned to social media to crowdsource advice.

“First 100 days,” said Means, a former consultant to Big Pharma who uses the social platform X to focus attention on chronic disease. “What should be done to reform the FDA?”

The question was more than rhetorical. Means is among a cadre of health business leaders and nonmainstream doctors who are influencing President Donald Trump’s focus on health policy.

Trump’s return to the White House has given Means and others in this space significant clout in shaping the nascent health policies of the new administration and its federal agencies. It’s also giving newfound momentum to “Make America Healthy Again,” or MAHA, a controversial movement that challenges prevailing thinking on public health and chronic disease.

Its followers couch their ideals in phrases like “health freedom” and “true health.” Their stated causes are as diverse as revamping certain agricultural subsidies, firing National Institutes of Health employees, rethinking childhood vaccination schedules, and banning marketing of ultra-processed foods to children on TV.

Public health leaders say the emerging Trump administration’s interest in elevating the sometimes unorthodox concepts could be catastrophic, eroding decades of scientific progress while spurring a rise in preventable disease. They worry the administration’s support could weaken trust in public health agencies.

Georges Benjamin, executive director of the American Public Health Association, said he welcomes broad intellectual scientific discussion but is concerned that Trump will parrot untested and unproven public health ideas he hears as if they are fact.

Experience has shown that people with unproven ideas will have his ear and his “very large bully pulpit,” he said. “Because he’s president, people will believe he won’t say things that aren’t true. This president, he will.”

But those in the MAHA camp have a very different take. They say they have been maligned as dangerous for questioning the status quo. The election has given them an enormous opportunity to shape politics and policies, and they say they won’t undermine public health. Instead, they say, they will restore trust in federal health agencies that lost public support during the pandemic.

“It may be a brilliant strategy by the right,” said Peter McCullough, a cardiologist who has come under fire for saying covid-19 vaccines are unsafe. He was describing some of the election-season messaging that mainstreamed their perspectives. “The right was saying we care about medical and environmental issues. The left was pursuing abortion rights and a negative campaign on Trump. But everyone should care about health. Health should be apolitical.”

The movement is largely anti-regulatory and anti-big government, whether concerning raw milk or drug approvals, although implementing changes would require more regulation. Many of its concepts cross over to include ideas that have also been championed by some on the far left.

Robert F. Kennedy Jr., an anti-vaccine activist Trump has nominated to run the Department of Health and Human Services, has called for firing hundreds of people at the National Institutes of Health, removing fluoride from water, boosting federal support for psychedelic therapy, and loosening restrictions on raw milk, consumption of which can expose consumers to foodborne illness. Its sale has prompted federal raids on farms for not complying with food safety regulations.

Means has called for top-down changes at the U.S. Department of Agriculture, which he says has been co-opted by the food industry.

Though he himself is not trained in science or medicine, he has said people had almost no chance of dying of covid-19 if they were “metabolically healthy,” referring to eating, sleeping, exercise, and stress management habits, and has said that about 85% of deaths and health care costs in the U.S. are tied to preventable foodborne metabolic conditions.

A co-founder of Truemed, a company that helps consumers use pretax savings and reimbursement programs on supplements, sleep aids, and exercise equipment, Means says he has had conversations behind closed doors with dozens of members of Congress. He said he also helped bring RFK Jr. and Trump together. RFK Jr. endorsed Trump in August after ending his independent presidential campaign.

“I had this vision for a year, actually. It sounds very woo-woo, but I was in a sweat tent with him in Austin at a campaign event six months before, and I just had this strong vision of him standing with Trump,” Means said recently on the Joe Rogan Experience podcast.

The former self-described never-Trumper said that, after Trump’s first assassination attempt, he felt it was a powerful moment. Means called RFK Jr. and worked with conservative political commentator Tucker Carlson to connect him to the former president. Trump and RFK Jr. then had weeks of conversations about topics such as child obesity and causes of infertility, Means said.

“I really felt, and he felt, like this could be a realignment of American politics,” Means said.

He is joined in the effort by his sister, Casey Means, a Stanford University-trained doctor and co-author with her brother of “Good Energy,” a book about improving metabolic health. The duo has blamed Big Pharma and the agriculture industry for increasing rates of obesity, depression, and chronic health conditions in the country. They have also raised questions about vaccines.

“Yeah, I bet that one vaccine probably isn’t causing autism, but what about the 20 that they are getting before 18 months,” Casey Means said in the Joe Rogan podcast episode with her brother.

The movement, which challenges what its adherents call “the cult of science,” gained significant traction during the pandemic, fueled by a backlash against vaccine and mask mandates that flourished during the Biden administration. Many of its supporters say they gained followers who believed they had been misled on the effectiveness of covid-19 vaccines.

In July 2022, Deborah Birx, covid-19 response coordinator in Trump’s first administration, said on Fox News that “we overplayed the vaccines,” although she noted that they do work.

Anthony Fauci, who advised Trump during the pandemic, in December 2020 called the vaccines a game changer that could diminish covid-19 the way the polio vaccine did for that disease.

Eventually, though, it became evident that the shots don’t necessarily prevent transmission and the effectiveness of the booster wanes with time, which some conservatives say led to disillusionment that has driven interest in the health freedom movement.

Federal health officials say the rollout of the covid vaccine was a turning point in the pandemic and that the shots lessen the severity of the disease by teaching the immune system to recognize and fight the virus that causes it.

Postelection, some Trump allies such as Elon Musk have called for Fauci to be prosecuted. Fauci declined to comment.

Joe Grogan, a former director of the White House’s Domestic Policy Council and assistant to Trump, said conservatives have been trying to articulate why government control of health care is troublesome.

“Two things have happened. The government went totally overboard and lied about many things during covid and showed no compassion about people’s needs outside of covid,” he said. “RFK Jr. came along and articulated very simply that government control of health care can’t be trusted, and we’re spending money, and it isn’t making anyone healthier. In some instances, it may be making people sicker.”

The MAHA movement capitalizes on many of the nonconventional health concepts that have been darlings of the left, such as promoting organic foods and food as medicine. But in an environment of polarized politics, the growing prominence of leaders who challenge what they call the cult of science could lead to more public confusion and division, some health analysts say.

Jeffrey Singer, a surgeon and senior fellow at the Cato Institute, a libertarian public policy research group, said in a statement that he agrees with RFK Jr.’s focus on reevaluating the public health system. But he said it comes with risks.

“I am concerned that many of RFK Jr.’s claims about vaccine safety, environmental toxins, and food additives lack evidence, have stoked public fears, and contributed to a decline in childhood vaccination rates,” he said.

Measles vaccination among kindergartners in the U.S. dropped to 92.7% in the 2023-24 school year from 95.2% in the 2019-20 school year, according to the Centers for Disease Control and Prevention. The agency said that has left about 280,000 kindergartners at risk.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

President-elect Donald Trump’s return to the White House could embolden Republicans who want to weaken or repeal the Affordable Care Act, but implementing such sweeping changes would still require overcoming procedural and political hurdles.

Trump, long an ACA opponent, expressed interest during the campaign in retooling the health law. In addition, some high-ranking Republican lawmakers — who will now have control over both the House and the Senate — have said revamping the landmark 2010 legislation known as Obamacare would be a priority. They say the law is too expensive and represents government overreach.

The governing trifecta sets the stage for potentially seismic changes that could curtail the law’s Medicaid expansion, raise the uninsured rate, weaken patient protections, and increase premium costs for millions of people.

“The Republican plans — they don’t say they are going to repeal the ACA, but their collection of policies could amount to the same thing or worse,” said Sarah Lueck, vice president for health policy at the Center on Budget and Policy Priorities, a research and policy institute. “It could happen through legislation and regulation. We’re on alert for anything and everything. It could take many forms.”

Congressional Republicans have held dozens of votes over the years to try to repeal the law. They were unable to get it done in 2017 after Trump became president, even though they held both chambers and the White House, in large part because some GOP lawmakers wouldn’t support legislation they said would cause such a marked increase in the uninsured rate.

Similar opposition to revamping the law could emerge again, especially because polls show the ACA’s protections are popular.

While neither Trump nor his GOP allies have elaborated on what they would change, House Speaker Mike Johnson said last month that the ACA needs “massive reform” and would be on the party’s agenda should Trump win.

Congress could theoretically change the ACA without a single Democratic vote, using a process known as “reconciliation.” The narrow margins by which Republicans control the House and Senate mean just a handful of “no” votes could sink that effort, though.

Many of the more ambitious goals would require Congress. Some conservatives have called for changing the funding formula for Medicaid, a federal-state government health insurance program for low-income and disabled people. The idea would be to use budget reconciliation to gain lawmakers’ approval to reduce the share paid by the federal government for the expansion population. The group that would be most affected is made up largely of higher-income adults and adults who don’t have children rather than “traditional” Medicaid beneficiaries such as pregnant women, children, and people with disabilities.

A conservative idea that would let individuals use ACA subsidies for plans on the exchange that don’t comply with the health law would likely require Congress. That could cause healthier people to use the subsidies to buy cheaper and skimpier plans, raising premiums for older and sicker consumers who need more comprehensive coverage.

“It’s similar to an ACA repeal plan,” said Cynthia Cox, a vice president and the director of the Affordable Care Act program at KFF, a health information nonprofit that includes KFF Health News. “It’s repeal with a different name.”

Congress would likely be needed to enact a proposal to shift a portion of consumers’ ACA subsidies to health savings accounts to pay for eligible medical expenses.

Trump could also opt to bypass Congress. He did so during his previous tenure, when the Department of Health and Human Services invited states to apply for waivers to change the way their Medicaid programs were paid for — capping federal funds in exchange for more state flexibility in running the program. Waivers have been popular among both blue and red states for making other changes to Medicaid.

“Trump will do whatever he thinks he can get away with,” said Chris Edelson, an assistant professor of government at American University. “If he wants to do something, he’ll just do it.”

Republicans have another option to weaken the ACA: They can simply do nothing. Temporary, enhanced subsidies that reduce premium costs — and contributed to the nation’s lowest uninsured rate on record — are set to expire at the end of next year without congressional action. Premiums would then double or more, on average, for subsidized consumers in 12 states who enrolled using the federal ACA exchange, according to data from KFF.

That would mean fewer people could afford coverage on the ACA exchanges. And while the number of people covered by employer plans would likely increase, an additional 1.7 million uninsured individuals are projected each year from 2024 to 2033, according to federal estimates.

Many of the states that would be most affected, including Texas and Florida, are represented by Republicans in Congress, which could give some lawmakers pause about letting the subsidies lapse.

The Trump administration could opt to stop defending the law against suits seeking to topple parts of it. One of the most notable cases challenges the ACA requirement that insurers cover some preventive services, such as cancer screenings and alcohol use counseling, at no cost. About 150 million people now benefit from the coverage requirement.

If the Department of Justice were to withdraw its petition after Trump takes office, the plaintiffs would not have to observe the coverage requirement — which could inspire similar challenges, with broader implications. A recent Supreme Court ruling left the door open to legal challenges by other employers and insurers seeking the same relief, said Zachary Baron, a director of Georgetown University’s Center for Health Policy and the Law.

In the meantime, Trump could initiate changes from his first day in the Oval Office through executive orders, which are directives that have the force of law.

“The early executive orders will give us a sense of policies that the administration plans to pursue,” said Allison Orris, a senior fellow at the Center on Budget and Policy Priorities. “Early signaling through executive orders will send a message about what guidance, regulations, and policy could follow.”

In fact, Trump relied heavily on these orders during his previous term: An October 2017 order directed federal agencies to begin modifying the ACA and ultimately increased consumer access to health plans that didn’t comply with the law. He could issue similar orders early on in his new term, using them to start the process of compelling changes to the law, such as stepped-up oversight of potential fraud.

The administration could early on take other steps that work against the ACA, such as curtailing federal funding for outreach and help signing up for ACA plans. Both actions depressed enrollment during the previous Trump administration.

Trump could also use regulations to implement other conservative proposals, such as increasing access to health insurance plans that don’t comply with ACA consumer protections.

The Biden administration walked back Trump’s efforts to expand what are often known as short-term health plans, disparaging the plans as “junk” insurance because they may not cover certain benefits and can deny coverage to those with a preexisting health condition.

The Trump administration is expected to use regulation to reverse Biden’s reversal, allowing consumers to keep and renew the plans for much longer.

But drafting regulations has become far more complicated following a Supreme Court ruling saying federal courts no longer have to defer to federal agencies facing a legal challenge to their authority. In its wake, any rules from a Trump-era HHS could draw more efforts to block them in the courts.

Some people with ACA plans say they’re concerned. Dylan Reed, a 43-year-old small-business owner from Loveland, Colorado, remembers the days before the ACA — and doesn’t want to go back to a time when insurance was hard to get and afford.

In addition to attention-deficit/hyperactivity disorder and anxiety, he has scleroderma, an autoimmune disease associated with joint pain and numbness in the extremities. Even with his ACA plan, he estimates, he pays about $1,000 a month for medications alone.

He worries that without the protections of the ACA it will be hard to find coverage with his preexisting conditions.

“It’s definitely a terrifying thought,” Reed said. “I would probably survive. I would just be in a lot of pain.”

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

Natalie Holt sees reminders nearly everywhere of the serious toll a years-long syphilis outbreak has taken in South Dakota. Scrambling to tamp down the spread of the devastating disease, public health officials are blasting messages to South Dakotans on billboards and television, urging people to get tested.

Holt works in Aberdeen, a city of about 28,000 surrounded by a sea of prairie, as a physician and the chief medical officer for the Great Plains Area Indian Health Service, one of 12 regional divisions of the federal agency responsible for providing health care to Native Americans and Alaska Natives in the U.S.

The response to this public health issue, she said, is not so different from the approach with the coronavirus pandemic — federal, state, local, and tribal groups need to “divide and conquer” as they work to test and treat residents. But they are responding to this crisis with fewer resources because federal officials haven’t declared it a public health emergency.

The public pleas for testing are part of health officials’ efforts to halt the outbreak that has disproportionately hurt Native Americans in the Great Plains and Southwest. According to the Great Plains Tribal Epidemiology Center, syphilis rates among Native Americans in its region soared by 1,865% from 2020 to 2022 — over 10 times the 154% increase seen nationally during the same period. The epidemiology center’s region spans Iowa, Nebraska, North Dakota, and South Dakota. The center also found that 1 in 40 Native American and Alaska Native babies born in the region in 2022 had a syphilis infection.

The rise in infections accelerated in 2021, pinching public health leaders still reeling from the coronavirus pandemic.

Three years later, the outbreak continues — the number of new infections so far this year is 10 times the full 12-month totals recorded in some years before the upsurge. And tribal health leaders say their calls for federal officials to declare a public health emergency have gone unheeded.

Pleas for help from local and regional tribal health leaders like Meghan Curry O’Connell, the chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation, preceded a September letter from the National Indian Health Board, a Washington, D.C.-based nonprofit that advocates for health care for U.S. tribes, to publicly urge the Department of Health and Human Services to declare a public health emergency. Tribal leaders said they need federal resources including public health workers, access to data and national stockpile supplies, and funding.

According to data from the South Dakota Department of Health, 577 cases of syphilis have been documented this year in the state. Of those, 430 were among Native American people — making up 75% of the state’s syphilis cases, whereas the group accounts for just 9% of the population.

The numbers can be hard to process, O’Connell said.

“It’s completely preventable and curable, so something has gone horribly wrong that this has occurred,” she said.

The Great Plains Tribal Leaders’ Health Board first called on HHS to declare a public health emergency in February. O’Connell said the federal agency sent a letter in response outlining some resources and training it has steered toward the outbreak, but it stopped short of declaring an emergency or providing the substantial resources the board requested. The board’s now months-old plea for resources was like the recent one from the National Indian Health Board.

“We know how to address this, but we do need extra support and resources in order to do it,” she said.

Syphilis is a sexually transmitted infection that can result in life-threatening damage to the heart, brain, and other organs if left untreated. Women infected while pregnant can pass the disease to their babies. Those infections in newborns, called congenital syphilis, kill dozens of babies each year and can lead to devastating health effects in others.

Holt said the Indian Health Service facilities she oversees have averaged more than 1,300 tests for syphilis monthly. She said a recent decline in new cases detected each month — down from 92 in January to 29 in September — may be a sign that things are improving. But a lot of damage has been done during the past few years.

Cases of congenital syphilis across the country have more than tripled in recent years, according to the Centers for Disease Control and Prevention. In 2022, 3,700 cases were reported — the most in a single year since 1994.

The highest rate of reported primary and secondary syphilis cases in 2022 was among non-Hispanic American Indian or Alaska Native people, with 67 cases per 100,000, according to CDC data.

O’Connell and other tribal leaders said they don’t have the resources needed to keep pace with the outbreak.

Chief William Smith, vice president of Alaska’s Valdez Native Tribe and chairperson of the National Indian Health Board, told HHS in the organization’s letter that tribal health systems need greater federal investment so the system can better respond to public health threats.

Rafael Benavides, HHS’ deputy assistant secretary for public affairs, said the agency has received the letter sent in early September and will respond directly to the authors.

“HHS is committed to addressing the urgent syphilis crisis in American Indian and Alaska Native communities and supporting tribal leaders’ efforts to mobilize and raise awareness to address this important public health crisis,” he said.

Federal officials from the health department and the CDC have formed task forces and hosted workshops for tribes on how to address the outbreak. But tribal leaders insist a public health emergency declaration is needed more than anything else.

Holt said that while new cases seem to be declining, officials continue to fight further spread with what resources they have. But obstacles remain, such as convincing people without symptoms to get tested for syphilis. To make this easier, appointments are not required. When people pick up medications at a pharmacy, they receive flyers about syphilis and information about where and when to get tested.

Despite this “full court press” approach, Holt said, officials know there are people who do not seek health care often and may fall through the cracks.

O’Connell said the ongoing outbreak is a perfect example of why staffing, funding, data access, and other resources need to be in place before an emergency develops, allowing public health agencies to respond immediately.

“Our requests have been specific to this outbreak, but really, they’re needed as a foundation for whatever comes next,” she said. “Because something will come next.”

Healthbeat is a nonprofit newsroom covering public health published by Civic News Company and KFF Health News. Sign up for its newsletters here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

KINGSTREE, S.C. — One morning in late April, a small brick health clinic along the Thurgood Marshall Highway bustled with patients.

There was Joshua McCray, 69, a public bus driver who, four years after catching COVID-19, still is too weak to drive.

Louvenia McKinney, 77, arrived complaining about shortness of breath.

Ponzella McClary brought her 83-year-old mother-in-law, Lula, who has memory issues and had recently taken a fall.

Morris Brown, the family practice physician who owns the clinic, rotated through Black patients nearly every 20 minutes. Some struggled to walk. Others pulled oxygen tanks. And most carried three pill bottles or more for various chronic ailments.

But Brown called them “lucky,” with enough health insurance or money to see a doctor. The clinic serves patients along the infamous “Corridor of Shame,” a rural stretch of South Carolina with some of the worst health outcomes in the nation.

“There is a lot of hopelessness here,” Brown said. “I was trained to keep people healthy, but like 80% of the people don’t come see the doctor, because they can’t afford it. They’re just dying off.”

About 50 miles from the sandy beaches and golf courses along the coastline of this racially divided state, Morris’ independent practice serves the predominantly Black town of roughly 3,200 people. The area has stark health care provider shortages and high rates of chronic disease, such as diabetes, high blood pressure, and heart disease.

But South Carolina remains one of the few states where lawmakers refuse to expand Medicaid, despite research that shows it would provide medical insurance to hundreds of thousands of people and create thousands of health care jobs across the state.

The decision means there will be more preventable deaths in the 17 poverty-stricken counties along Interstate 95 that constitute the Corridor of Shame, Brown said.

“There is a disconnect between policymakers and real people,” he said. The African Americans who make up most of the town’s population “are not the people in power.”

The U.S. health care system, “by its very design, delivers different outcomes for different populations,” said a June report from the National Academies of Sciences, Engineering, and Medicine. Those racial and ethnic inequities “also contribute to millions of premature deaths, resulting in loss of years of life and economic productivity.”

Over a recent two-decade span, mounting research shows, the United States has made almost no progress in eliminating racial disparities in key health indicators, even as political and public health leaders vowed to do so.

And that’s not an accident, according to academic researchers, doctors, politicians, community leaders, and dozens of other people KFF Health News interviewed.

Federal, state, and local governments, they said, have put systems in place that maintain the status quo and leave the well-being of Black people at the mercy of powerful business and political interests.

Across the nation, authorities have permitted nearly 80% of all municipal solid waste incinerators — linked to lung cancer, high blood pressure, higher risk of miscarriages and stillbirths, and non-Hodgkin lymphoma — to be built in Black, Latinx, and low-income communities, according to a complaint filed with the federal government against the state of Florida.

Federal lawmakers slowed investing in public housing as people of color moved in, leaving homes with mold, vermin, and other health hazards.

And Louisiana and other states passed laws allowing the carrying of concealed firearms without a permit even though gun violence is now the No. 1 killer of kids and teens. Research shows Black youth ages 1 to 17 are 18 times as likely to suffer a gun homicide as their white counterparts.

“People are literally dying because of policy decisions in the South,” said Bakari Sellers, a Democratic former state representative in South Carolina.

KFF Health News undertook a yearlong examination of how government decisions undermine Black health — reviewing court and inspection records and government reports, and interviewing dozens of academic researchers, doctors, politicians, community leaders, grieving moms, and patients.

From the cradle to the grave, Black Americans suffer worse health outcomes than white people. They endure greater exposure to toxic industrial pollution, dangerously dilapidated housing, gun violence, and other social conditions linked to higher incidence of cancer, asthma, chronic stress, maternal and infant mortality, and myriad other health problems. They die at younger ages, and COVID shortened lives even more.

Disparities in American health care mean Black people have less access to quality medical care, researchers say. They are less likely to have health insurance and, when they seek medical attention, they report widespread incidents of discrimination by health care providers, a KFF survey shows. Even tools meant to help detect health problems may systematically fail people of color.

All signs point to systems rooted in the nation’s painful racist history, which even today affects all facets of American life.

“So much of what we see is the long tail of slavery and Jim Crow,” said Andrea Ducas, vice president of health policy at the Center for American Progress, a nonprofit think tank.

Put simply, said Jameta Nicole Barlow, a community health psychologist and professor at George Washington University, government actions send a clear message to Black people: “Who are you to ask for health care?”

Past and Present

The end of slavery gave way to laws that denied Black people in the U.S. basic rights, enforced racial segregation, and subjected them to horrific violence.

“I can take facts from 100 years ago about segregation and lynchings for a county and I can predict the poverty rate and life expectancy with extraordinary precision,” said Luke Shaefer, a professor of social justice and public policy at the University of Michigan.

Starting in the 1930s, the federal government sorted neighborhoods in 239 cities and deemed redlined areas — typically home to Black people, Jews, immigrants, and poor white people — unfit for mortgage lending. That process concentrated Black people in neighborhoods prone to discrimination.

Local governments steered power plants, oil refineries, and other industrial facilities to Black neighborhoods, even as research linked them to increased risks of cardiovascular and respiratory diseases, cancer, and preterm births.

The federal government did not even begin to track racial disparities in health care until the 1980s, and at that time disparities in heart disease, infant mortality, cancer, and other major categories accounted for about 60,000 excess deaths among Black people each year. Elevated rates of six diseases, including cancer, addiction, and diabetes, accounted for more than 80% of the excess mortality for Black and other minority populations, according to “The Heckler Report,” released in 1985. During the past two decades there have been 1.63 million excess deaths among Black Americans relative to white Americans. That represents a loss of more than 80 million years of life, according to a 2023 JAMA study.

Recent efforts to address health disparities have run headlong into racist policies still entrenched in health systems. The design of the U.S. health care system and structural barriers have led to persistent health inequities that cost more than a million lives and billions of dollars, according to the national academies report.

“When COVID was first hitting, it was just sort of immediately clear who was going to suffer the most,” Ducas said, “not just because of differential access to care, but who was in a living environment that’s multigenerational or crowded, who is more likely to be in a job where they are an essential worker, who is going to be more reliant on public transportation.”

For example, in spring 2020, the North Carolina health department, led by current Centers for Disease Control and Prevention Director Mandy Cohen, failed to get COVID testing to vulnerable Black communities where people were getting sick and dying from COVID-related causes at far higher rates than white people.

And Black Americans were far more likely to hold jobs — in areas such as transportation, health care, law enforcement, and food preparation — that the government deemed essential to the economy and functioning of society, making them more susceptible to COVID, according to research.

Until McCray, the bus driver in Kingstree, South Carolina, got COVID in his mid-60s, he was strong enough to hold two jobs. He ended up on a feeding tube and a ventilator after he contracted COVID in 2020 while taking other essential workers from this predominantly Black area to jobs in a whiter, wealthier tourist town.

Now he cannot work and at times has difficulty walking.

“I can tell you the truth now: It was only the good Lord that saved him,” said Brown, the rural physician who treated McCray and many patients like him.

Federal and state governments have spent billions of dollars to implement the Affordable Care Act, the Children’s Health Insurance Program, and other measures to increase access to health care. Yet, experts said, many of the problems identified in “The Heckler Report” persist.

When Lakeisha Preston in Mississippi was diagnosed with walking pneumonia in 2019, she ended up with a $4,500 medical bill she couldn’t pay. Preston works at Maximus, which has a $6.6 billion contract with the federal government to help people sign up for Medicare and Affordable Care Act health plans.

She is convinced that being a Black woman made her challenges more likely.

“Think about how many centuries the same thing has been happening,” said Preston, noting how her mother worked two jobs her entire life without a vacation and suffered from health conditions including diabetes, cataracts, and carpal tunnel syndrome. Today Preston can’t afford to put her 8-year-old son on her health plan, so he’s covered by Medicaid.

“We consistently offer healthcare plans that are on par, if not better, than those available to most Americans through state and federal exchanges,” said Eileen Cassidy Rivera, a Maximus spokesperson.

In email exchanges with the Biden administration, spokespeople insisted that it is making progress in closing the racial health gap. They said officials have taken steps to address food insecurity, housing instability, pollution, and other social determinants of health that help fuel disparities.

President Joe Biden issued an executive order on his first full day in office in 2021 that said “the COVID-19 pandemic has exposed and exacerbated severe and pervasive health and social inequities in America.” Later that year, the White House issued another executive order focused on improving racial equity and acknowledged that long-standing racial disparities in health care and other areas have been “at times facilitated by the federal government.”

“The Biden-Harris Administration is laser focused on addressing the health needs of Black Americans by dismantling persistent structural inequities,” said Renata Miller, a spokesperson for the administration.

The CDC, along with some state and local governments, declared racism a serious public health threat.

U.S. Rep. Alma Adams, a North Carolina Democrat, pushed for “Momnibus” legislation to reduce maternal mortality. Yet federal lawmakers left money for Black maternal health out of the historic Inflation Reduction Act in 2022.

“I come to this space as an elected official, knowing what it is like to be poor, knowing what it is like to not have insurance and having to get up at 3, 4 in the morning with my mom to take my sister to the emergency room,” Adams said.

In the 1960s in North Carolina, Adams and her family would take her sister Linda, who had sickle cell anemia, to the emergency room because they had no doctor and could not afford health insurance. Linda died at the age of 26 in 1971.

“You have to have some sensitivity for this work,” Adams said. “And a lot of folks that I’ve worked with don’t have it.”

Governor’s Veto

The website for Kingstree depicts idyllic images of small-town life, with white people sitting on a porch swing, kayaking on a river, eating ice cream, and strolling with their dogs. Two children wearing masks and a food vendor are the only Black people in the video, even though Black people make up 70% of the town’s population.

But life in Kingstree and surrounding communities is marked by poverty, a lack of access to health care, and other socioeconomic disadvantages that have given South Carolina poor rankings in key health indicators such as rates of death and obesity among children and teens.

Some 23% of residents in Williamsburg County, which contains Kingstree, live below the poverty line, about twice the national average, according to federal data.

There is one primary care physician for every 5,080 residents in Williamsburg County. That’s far less than in more urbanized and wealthier counties in the state such as Richland, Greenville, and Beaufort.

Edward Simmer, the state’s interim public health director, said that if “you are African American in a rural zone, it is like having two strikes against you.”

Asked if South Carolina should expand Medicaid, Simmer said the challenges South Carolina and other states confront are worsened by health care provider shortages and structural inequities too large and complicated for Medicaid expansion alone to solve.

“It is not a panacea,” he said.

But for Brown and others, the reason South Carolina remains one of the few states that have not expanded Medicaid — one step that could help narrow disparities with little cost to the state — is clear.

“Every year we look at the data, we see the health disparities and we don’t have a plan to improve,” Brown said. “It has become institutionalized. I call it institutional racism.”

A July report from George Washington University found that Medicaid expansion would provide insurance to 360,000 people and add 18,000 jobs in the health care sector in South Carolina.

“Racism is the reason we don’t have Medicaid expansion. Full stop,” said Janice Probst, a former director of the Rural and Minority Health Research Center in South Carolina. “These are not accidents. There is an idea that you can stay in power by using racism.”

South Carolina’s Republican governor, Henry McMaster, in July vetoed legislation that would have created a committee to consider Medicaid expansion, saying he did not believe it would be “fiscally responsible.”

Expanding Medicaid in the state could result in $4 billion in additional economic output from an influx of federal funds in 2026, according to the July report.

Beyond health care coverage and provider shortages, Black people “have never been given the conditions needed to thrive,” said Barlow, the George Washington University professor. “And this is because of white supremacy.”

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

On learning last year she was pregnant with her second child, Cailyn Morreale was overcome with fear and trepidation.

“I was so scared,” said Morreale, a resident of the small western North Carolina town of Mars Hill. In that moment, her joy about being pregnant was eclipsed by fear she would have to stop taking buprenorphine, a drug used to treat opioid withdrawal that had helped counter her addiction.

Morreale’s fear was compounded by the rigidity of the most common approach to treating babies born after being exposed in the womb to opioids or some medications used to treat opioid addiction.

For decades throughout the opioid crisis, most doctors have relied on medication-heavy regimens to treat babies who are born experiencing neonatal opioid withdrawal syndrome. Those protocols often meant separating newborns from their mothers, placing them in neonatal intensive care units, and giving them medications to treat their withdrawal.

But research has since indicated that in many, if not most, cases, those extreme measures are unnecessary. A newer, simpler approach that prioritizes keeping babies with their families called Eat, Sleep, Console is being increasingly embraced.

In recent years, doctors and researchers have found that keeping babies with their mothers and ensuring they’re comfortable often works better and gets them out of the hospital faster.

Despite her worst fears, Morreale was never separated from her son. She was able to begin breastfeeding immediately. In fact, she was told, the trace of buprenorphine in her breast milk would help her son withdraw from it.

Her experience was different because she had found her way to Project CARA, an Asheville, North Carolina-based program, administered through the Mountain Area Health Education Center, that supports pregnant people and parents with substance use disorders. Morreale’s care team assured her she did not need to discontinue buprenorphine and that her baby would be assessed and monitored using the Eat, Sleep, Console approach. The protocol deems babies OK to be sent home so long as they’re eating, sleeping, and consolable when upset.

“By the grace of God, he was awesome,” Morreale said of her son.

David Baltierra, former director of West Virginia University’s Rural Family Medicine Residency Program, chair of WVU’s Department of Family Medicine – Eastern Division, and a family physician, suggests this protocol could simply be called “parenting.”

The method is increasingly being used instead of the long-embraced approach to treating opioid-affected newborns called the Finnegan Neonatal Abstinence Scoring System. That tool includes a list of 21 questions (is the baby crying excessively, sweating, experiencing tremors, sneezing, etc.), the answers to which determine whether the newborn should get medication to counteract withdrawal symptoms, which would then require an extended stay in a neonatal ICU.

Baltierra, though, has issues with the Finnegan method. For example, it often results in a soundly sleeping baby being awakened to be scored. That didn’t make sense to Baltierra. If the baby is sleeping, she’s likely doing fine.

Instead, health professionals should look for the telltale signs of a baby experiencing opioid withdrawal syndrome, he said. “Their body is in tension, they have a high pitch, they don’t calm down.”

Baltierra and his colleagues have been training residents to use an Eat, Sleep, Console approach for a decade, progressively more so in the past six years. The results are persuading more health professionals to adopt the method.

A 2023 study found babies treated this way were discharged from the hospital in nearly half the time and less likely to receive medication than those receiving Finnegan-based care.

Matthew Grossman, an associate professor of pediatrics at the Yale School of Medicine, refers to the introduction of the model of treatment he has helped pioneer as “the least innovative” undertaking imaginable.

Research shows that optimal care for pregnant women who’ve experienced opioid use disorder includes treatment with buprenorphine or methadone, which carries the risk their newborn will have withdrawal symptoms. Grossman and colleagues found a non-pharmacological-first approach works best.

He said the Finnegan tool is useful but often too rigid. Under its scoring, one sneeze too many could send a baby to the NICU for weeks.

Grossman said he observed that some babies receiving medications did well for a few days but began to decline when their mothers were sent home without them. Those observations made him ask, “Did the kid need more medicine, or more mom?”

Research by Leila Elder and Madison Humerick, who each did their residency in WVU’s rural program, found that median stays for newborns in withdrawal dropped from 13 days in 2016 to three in 2020.

Elder said babies born at the 25-bed rural hospital where they performed deliveries received medications to treat their withdrawal symptoms only when unrelated issues sent them to other hospitals for NICU care.

The simpler treatment also means more babies born in rural communities can receive care closer to home and has reduced the likelihood a mother will be released before her baby is cleared to go home.

Grossman suggested that rural hospitals are better suited to employ the Eat, Sleep, Console approach than big-city institutions, given the latter’s generally easier access to a NICU and propensity to choose that option.

Sarah Peiffer recalls the first time, as a medical student, she witnessed a nurse administering the Finnegan protocol, discussing it in clinical terms at a new mother’s bedside.

“And I remember being kind of horrified,” she said. The process was clearly distressing to both mother and child. “I felt like there was almost a punitive feeling to it, like we were telling this mom, ‘Look what you did to your baby.’”

Peiffer is now a Project CARA practitioner and family health physician at Blue Ridge Health in western North Carolina and a vocal proponent of ESC and its approach to partnering with families. “You look at all the nonpharmacologic stuff you’re supposed to be doing — like keeping the lights low in the room, keeping the baby swaddled, doing as much skin-to-skin with mom as possible — and you really treat mom as medicine.”

Research suggests immediate postbirth skin‐to‐skin contact offers “vital advantages” to short‐ and long‐term health and bonding.

That contact, Elder said, “releases endorphins for mom,” which helps lower the risk of postpartum depression.

Grossman said developing the Eat, Sleep, Console protocol was simply a matter of pausing to reassess.

The original intent of the Finnegan tool wasn’t to render the process so rigid. But “everybody is excited to have a tool, and then this approach calcified around it,” he said.

Grossman said the objective of the simpler approach was to place the family at the core of care, and shorter hospital stays for babies was simply a fortuitous outcome. The shift in approach fits into a wider move toward judgment-free, family-centered care for those who’ve experienced addiction and for their children.

Now, he said, after five days, mothers often say “‘Can we go home? I think I got this,’” and they’re treated “with the same respect as any other mom.”

Peiffer said she has witnessed this mother-centric care counter “that sense of shame that people feel instead of families feeling empowered to care for their infant.” It represents “such a major shift in how we think about neonatal withdrawal both medically and culturally.”

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

CUTHBERT, Ga. — While customers at Adams Family Pharmacy picked up their prescriptions on a hot summer day, some stopped in for coffee, ice cream, homemade cake, or cookies.

It wasn’t a bake sale, but the sweets bring extra revenue as pharmacist and co-owner Nikki Bryant works to achieve profitability at her business on the town square.

Bryant said she is doing all she can to bolster it against a powerful force that threatens her and other independent pharmacists: the middlemen who manage virtually all prescriptions written in the U.S., called pharmacy benefit managers, or PBMs. Serving as brokers among drugmakers, pharmacies, and health insurers, these health care entities have drawn scrutiny from Congress, the Federal Trade Commission, and state legislatures for their role in the increase in drug prices.

Bryant and other independent pharmacists say PBMs not only create higher costs but also make it harder for patients to access medications. So they were hopeful about state legislation this year that would have increased their reimbursement to match the average prices paid to retail chain pharmacies through the state employee health plan. But Gov. Brian Kemp vetoed the bill.

Kemp cited a fiscal estimate that it would cost the state as much as $45 million a year and said “the General Assembly failed to fund this initiative.”

Underlining the Georgia legislative reform effort against pharmacy benefit managers was an analysis by the American Pharmacy Cooperative, which represents independent pharmacies, that reviewed the price differential paid to a north Georgia pharmacy and nearby chain stores.

The analysis early this year showed chains were paid well beyond the family business for many of the same medications: For example, the chains received an average of nearly $54 for the antidepressant bupropion, while Bell’s Family Pharmacy in Tate, Georgia, got $5.54, the analysis said. For a drug used to treat blood pressure, amlodipine, chain pharmacies received an average of $23.55, while Bell’s got $1.51.

Bell’s Family Pharmacy closed earlier this year.

“The differences in Georgia are unbelievable,” Antonio Ciaccia, who runs Ohio-based consulting firm 3 Axis Advisors. “If you’re a pharmacist, you don’t have any control over which drugs you dispense and which you don’t.”

By controlling prices and availability, pharmacy benefit managers cause patients and employers to spend more for medications, according to the Federal Trade Commission and pharmacy groups. On Sept. 20, the FTC sued three of the largest PBMs — CVS Health’s Caremark, Cigna’s Express Scripts, and UnitedHealth Group’s Optum Rx, which together control about 80% of U.S. prescription drug sales. The agency said they created a “perverse drug rebate system” that artificially inflates the price of insulin. Each company denied the allegations.

The lawsuit followed a scathing FTC report in July that said the “dominant PBMs can often exercise significant control over which drugs are available, at what price, and which pharmacies patients can use to access their prescribed medications.”

The trade group that represents PBMs, the Pharmaceutical Care Management Association, said the insulin market is working well and blamed drugmakers for historically higher prices of the medication.

Bryant and other independent pharmacists, though, say they lose money filling certain prescriptions while reimbursements favor chain pharmacies like CVS that have corporate ties to pharmacy benefit managers. And even the chain pharmacies have retrenched, with CVS, Rite Aid, and Walgreens announcing layoffs or store closures in recent months.

“PBMs are like the mafia,” Bryant said. “They pay us what they want to pay us. They are sucking all the money out of health care.”

Pharmacy benefit managers will charge some health insurance plans more for a medication than what they reimburse a pharmacy, keeping the extra money as profit, critics say. This practice is known as “spread pricing.” Large PBMs also take money from drugmakers as a “rebate” to give their drugs preferential treatment on health plans’ lists of medications, independent pharmacies say. And by favoring certain pharmacies with whom they have business ties, experts say, these drug brokers help force independent stores such as Bell’s to close.

The veto by Kemp, a Republican, came despite the GOP-led General Assembly voting overwhelmingly for Senate Bill 198 on the last day of the legislative session.

Kemp spokesperson Garrison Douglas said, “The governor remains entirely and wholeheartedly supportive of Georgia’s independent pharmacists and the need for PBM transparency.”

In his veto message, Kemp voiced support for a study of independent pharmacy drug reimbursements and PBM practices. And he said independent pharmacists are getting an extra $3 dispensing fee this year on state employee prescriptions.

The state Department of Community Health, which oversees the State Health Benefit Plan, told KFF Health News that CVS Caremark, the PBM handling the state employee business, supplied the cost estimate Kemp used to justify his veto.

Fiona Roberts, a spokesperson for Community Health, said the department didn’t have time to conduct its own analysis.

CVS Caremark said it used historical claims data to calculate the cost impact of the higher reimbursement.

Nationally, criticism of PBM practices intensified over the summer with the Federal Trade Commission report.

The Pharmaceutical Care Management Association pushed back, saying the report “is based on anecdotes and comments from anonymous sources and self-interested parties and supported only by two cherry-picked case studies that are implied to be representative of the entire market.”

Members of both parties in Congress have tackled PBM reform. House members recently introduced another proposal, known as the Pharmacists Fight Back Act, which supporters say would add transparency, limit costs for patients, ensure they get the benefit of drugmaker discounts, and protect their pharmacy choices.

The consolidation that has combined health insurers with PBMs — including their operating their own retail, mail-order, and specialty pharmacies — has created financial behemoths, said U.S. Rep. Buddy Carter, a Georgia Republican and a pharmacist. “I’m interested in busting them up,” he said.

Alexander Oshmyansky, co-founder of Mark Cuban Cost Plus Drug Company, said the PBMs siphon off about a third of the $400 billion a year spent on pharmaceuticals.

“What we could do as a society with $100 billion as opposed to paying some companies to process drug payments,” Oshmyansky said.

PCMA, the trade group, cited a report funded by the three biggest pharmacy benefit managers that said their operating margins are less than 5%.

And the group says that discussions about congressional reform “reflect a one-sided view informed directly by the pharmaceutical industry’s blame game designed to vilify PBMs to keep prescription drug prices high and increase drug company profits.”

Underpayments by PBMs, however, have accelerated the closures of mom-and-pop pharmacies across the country, said the National Community Pharmacists Association, which represents independent pharmacies.

The U.S. loses almost one such pharmacy a day, said Anne Cassity, a senior vice president of the association. Rural pharmacies, which are hard to reach for patients lacking transportation, are especially vulnerable, she said.

Bryant’s two pharmacies deliver to several counties, including to patients who have a disability or no transportation. The cost to patients: zero.

Most states have passed some version of oversight or restrictions on pharmacy benefit managers.

In Montana, state officials have collected financial reports from pharmacy benefit managers over the past two years after passing a bill to promote transparency in these businesses.

Data from 2022 shows that rebates in Montana rarely are directly returned to people buying prescriptions. Instead, they’re pocketed by the PBMs or returned to health plans.

Josh Morris, who owns three independent rural pharmacies in southwestern Montana, said his pharmacies have seen reimbursement rates for medications bought under PBM-managed plans drop.

Morris said his business routinely either breaks even or loses money. “Our plan is that once we reach a certain level of cash, that we will be out,” Morris said. “As in ‘closed.’”

Frank Cote, with Montana’s insurance commissioner’s office, said that the state has tried to make business easier for small pharmacies but that state officials still don’t control how much PBMs pay. Cote said the state will look for ways within existing rules or future legislation to support rural pharmacies.

Following Kemp’s veto in Georgia, the pharmacy pay differential sparked criticism from an unusual place: within the board of the state Department of Community Health, the agency that runs the State Health Benefit Plan.

Mark Shane Mobley, a board member, said at an August meeting that independent pharmacies’ pay in the state employee plan should be on par with a chain’s. The PBM profit “is going to line people’s pockets that are far outside of the state,” said Mobley, president of Avilys Sleep & EEG, a Georgia provider of sleep disorder and electroencephalogram testing. “Our independent pharmacies, they’re hiring people locally. They’re taking care of the local community.”

Community Health Commissioner Russel Carlson said the agency has an ongoing dialogue with CVS Caremark, the PBM handling the state employee plan medications.

“We don’t have our head in the sand. We know there are some frustrations out there that exist in this space,” he said. “But we acknowledge that we do have contractual responsibilities.”

In Cuthbert, Bryant said she can make more profit on cake and coffee than with many medications.

Still, she’s in business while a nearby CVS pharmacy closed recently. “We outcompeted them on service,” Bryant said.

Montana correspondent Katheryn Houghton and senior correspondent Arthur Allen contributed to this report.

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

When Lyft driver Tramaine Carr transports seniors and sick patients to hospitals in Atlanta, she feels like both a friend and a social worker.

“When the ride is an hour or an hour and a half of mostly freeway driving, people tend to tell you what they’re going through,” she said.

Drivers such as Carr have become a critical part of the medical transportation system in Georgia, as well as in Washington, D.C., Mississippi, Arizona, and elsewhere. While some patients use transportation companies solely dedicated to medical rides or nonemergency ambulance rides to get to their appointments, the San Francisco-based ride-hailing companies Uber and Lyft are also ferrying people to emergency rooms, kidney dialysis, cancer care, physical therapy and other medical visits.

But Georgia ride-hail drivers aren’t only serving patients living in Atlanta or its sprawling suburbs. When rural Georgians are too sick to drive themselves, Uber or Lyft is often one of the only ways to reach medical care in the state capital.

Rural hospital closures in Georgia have meant people battling cancer and other serious illnesses must now commute two or more hours to treatment facilities in Atlanta, said Bryan Miller, director of psychosocial support services at the Atlanta Cancer Care Foundation, a medical practice offshoot that seeks to alleviate financial burdens for cancer patients and their families.

From April 2022 to April 2024, Lyft drivers completed thousands of rides that were greater than 50 miles each way and that began or ended at Atlanta-area medical treatment centers, including the Winship Cancer Institute of Emory University and Emory University Hospital Midtown, according to Lyft.

While 75% of those trips were under 100 miles, the company said, 21% of them were between 100 and 200 miles and 4% were over 200, showing that even Georgians who live hours away from metro Atlanta rely on the ride-hail platform to reach medical care there.

Uber Health global head Zachary Clark declined to provide comparable ridership data. Uber Health is a division of Uber that organizes medical transportation for some Medicaid and Medicare recipients, health care workers, prescription drug delivery, and others seeking reimbursement for medical-related Uber rides, according to Uber’s website.

Lyft also has a health care division, offering programs such as Lyft Assisted and Lyft Concierge to coordinate rides for patients.

Nationwide, some insurance companies and cancer treatment centers, plus Medicare Advantage and state Medicaid plans, pay for such ride-hailing services, often with the goal of reducing missed appointments, according to Krisda Chaiyachati, an adjunct assistant professor at the University of Pennsylvania medical school.

In 2024, 36% of individual Medicare Advantage plans and 88% of special needs plans offered transportation services, said Jeannie Fuglesten Biniek, associate director of Medicare policy at KFF, the health policy research, polling, and news organization that includes KFF Health News. A special needs plan provides extra benefits to Medicare recipients who have severe and chronic diseases or certain other health care needs, or who also have Medicaid.

And Medicaid — the federal-state government safety net insurance plan for those with low incomes or disabilities — paid for up to 4 million beneficiaries to use nonemergency medical transportation services annually from 2018 through 2021, according to a Department of Health and Human Services report. Patients residing in rural areas used ride-hailing and other nonemergency transportation providers at the highest rates, the report said.

The estimated total federal and state investment in nonemergency medical transportation was approximately $5 billion in 2019, according to a study by the Texas A&M University Transportation Institute.

Even with some insurance covering trips or charities offering ride credits, social workers say, many ailing patients are still left without a ride. Nationwide, 21% of adults without access to a vehicle or public transit went without needed medical care in 2022, according to a study by the Robert Wood Johnson Foundation. People who lacked access to a vehicle but had access to public transit were less likely to skip needed care.

The data analytics company Geotab ranked Atlanta as tied for second worst in the nation when it comes to the accessibility of its public transportation network.

“The ability to get to a doctor’s appointment can be a barrier to care,” said Rochelle Schube, a cancer support group facilitator in Atlanta. “If I give a patient $250 in Uber cards and they live far away, that gets spent quickly.”

The fact that Uber and Lyft are harder to come by in rural America compounds the lack of medical access in those areas. “When you move to rural areas — which you could argue have a higher need — you see fewer services,” Chaiyachati said.

Finding drivers who are able and willing to provide medical transportation can be a challenge. The Atlanta-based start-up MedTrans Go connects patients and health care providers with vetted drivers, many offering wheelchair or stretcher rides, in Georgia and 16 other states. Many of its drivers have medical training, walk patients to and from medical facilities or their homes, and can handle complex situations for vulnerable patients, said Dana Weeks, the company’s co-founder and CEO.

The company’s app can also dispatch directly to Uber or Lyft for patients who do not need specialized assistance, she said.

Uber and Lyft trips can save patients and insurers money, costing a fraction of the typical fee for an ambulance ride, said David Slusky, an economics professor at the University of Kansas who has studied the impact of ride-hailing services on medicine.

But instead of all of that, argued Timothy Crimmins, a history professor emeritus at Georgia State University and a former director of the school’s neighborhood-studies center, the best solution would be for Georgia to expand Medicaid, so more rural hospitals would be able to remain open and Georgians could seek medical care close to home.

The decision by Georgia lawmakers to not accept a federally funded expansion of Medicaid has left more than 1.4 million Georgians without health insurance, according to KFF — and that hurts rural hospitals when those patients use the medical facilities and cannot pay their bills. In Georgia, 10 rural hospitals have either closed or ceased their inpatient care operations since 2010, according to a 2024 report from health care consultant Chartis, and 18 more are in danger of shuttering.

Until more patients are insured, Crimmins said, the state should subsidize Uber and Lyft trips for less prosperous Georgians who need help reaching medical care in Atlanta. “We might be talking about $100 to $150 round-trip,” he said. “That can be subsidized.”

Still, ferrying around patients is not for every ride-hail driver. Damian Durand said his Chevrolet Equinox SUV is large enough to accommodate a medical passenger requiring a wheelchair, but he isn’t paid extra to transport those with medical needs. He said some of his recent passengers in Atlanta have been Medicaid recipients with mental health conditions or disabilities.

“It can be stressful,” he said. “I do feel like Uber and Lyft are trying to catch me off guard. When I can see that the ride is going to the hospital, I try to avoid or cancel the ride.”

While Durand’s experience with medical transport has been mostly negative, Carr loves the work and appreciates being able to help older Georgians, who she said often tip her well. For her, ride-hail work remains a good option even when it entails medical calls.

“It’s not stressful for me,” she said. “I worked a good 20 years in customer service. For me, human connection is important. I tried to work from home, and I really didn’t like it. I prefer this because I can connect with people.”

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

Tom Zawierucha, 58, a building services worker in New Jersey, wishes candidates would talk more about protecting older Americans from big medical bills.

Teresa Morton, 43, a freight dispatcher in Memphis, Tennessee, with two teenagers, wants to hear more about how elected officials would help working Americans saddled with unaffordable deductibles.

Yessica Gray, 28, a customer support representative in Wisconsin, craves relief from high drug prices and medical bills that have driven her and her husband deep into debt. “How much are we going to pay?” she said. “It’s just something that’s always on my mind.”

Health care hasn’t figured prominently in this increasingly acrimonious presidential campaign. And the economy has generally topped the list of voters’ concerns.

But Americans remain intensely worried about paying for medical care, national surveys show.

Two in 3 U.S. adults in a recent nationwide poll by West Health and Gallup said they’re concerned a major health event would land them in debt. A similar share said health care isn’t getting enough attention in the campaign.

To better understand voters’ health care concerns as the 2024 campaign nears an end, KFF Health News worked with research firm PerryUndem to convene a pair of focus groups with 16 people from across the country. PerryUndem is a nonpartisan firm based in Washington, D.C., that studies public views on health care and other issues.

The focus group participants represented a broad swath of the electorate, with some favoring Republican candidates, and others Democrats. But nearly all shared a common complaint: Neither presidential candidate has talked enough about how they’d help people struggling to pay for medical care.

“You don’t really hear anything much about health care costs,” said Bob Groegler, 46, who works in residential financing in eastern Pennsylvania. Groegler said he’s worried he may never be able to retire because he won’t have enough money to pay his medical bills.

Former President Donald Trump, the Republican nominee, hasn’t offered a detailed health care agenda, though he criticizes current laws and said he has “concepts of a plan” to improve the 2010 Affordable Care Act, often called Obamacare.

Vice President Kamala Harris, a Democrat, has laid out more detailed health care proposals, including building on legislation signed by President Joe Biden to lower patients’ bills.

In 2022, Biden signed the Inflation Reduction Act, which limits how much Medicare enrollees must pay out-of-pocket for prescription drugs, including a $35 monthly cap on insulin. The legislation also provides additional federal aid to help Americans buy health insurance through the Affordable Care Act, though this aid will expire unless Congress and the president renew it next year.

Harris has said she will expand the aid and push for new assistance to Medicare enrollees who need home care. She also has pledged to continue federal efforts to relieve medical debt, a nationwide problem that burdens about 100 million people.

But most of the focus group participants said they knew little about these proposals, complaining that hot-button issues like abortion have dominated the campaign.

Many also expressed deep skepticism that either Harris or Trump would do much to lighten the burden of medical bills.

“I believe they’re out of touch with our reality,” said Renata Bobakova, 46, a teacher and mother outside Cleveland. “We never know when we’ll get sick. We never know when we’ll fall down or sprain an ankle. And prices really can be astronomical. … I’m constantly worried about that.”

Bobakova, who is from Slovakia, said she went back to Europe to give birth to her daughter 10 years ago to avoid crippling medical debt she knew she’d incur in this country. Parents with private health coverage face on average more than $3,000 in medical bills related to a pregnancy and childbirth that aren’t covered by insurance.

Other focus group participants said they or people they knew had left the country to get cheaper prescription drugs. The U.S. has the highest medical prices in the world, research shows.

Several focus group participants, such as Kevin Gaudette, 64, a retired semiconductor engineer in North Carolina, blamed large hospitals, drug companies, and insurers for blocking efforts to lower patients’ costs to protect their profits. “I think everybody has their finger in the pie,” Gaudette said.

Martha Chapman, 64, who is also retired and lives in Philadelphia, pointed to what she called “corporate greed.” “I just don’t think it’s going to change,” she said.

In the closing days of the campaign, that cynicism represents a particular problem for Harris, said PerryUndem co-founder Michael Perry, who led the two focus groups.

Harris has tried to distinguish herself as the candidate who is more serious about policy and more sympathetic to voters’ economic struggles, Perry said. And in recent weeks, she’s begun airing new ads highlighting health care issues.

But even focus group participants who said they lean Democratic seemed to blame both candidates for not addressing Americans’ health care concerns. “They’re not feeling listened to,” Perry said.

Many of the participants nevertheless continued to express hope that an issue as important as health care would someday get the attention of elected officials, regardless of political party.

“We’re all human beings here. We’re all people just trying to make it,” said Zawierucha, the building services worker in New Jersey. “If we get sick or have to go in and get something done, we should have that peace of mind that we can go in there and not have to worry about paying it off for the next 20 years.”

“Just give us some peace of mind,” he said.

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.